Faith had another MRI today (with and without contrast), as well as an MRV. These were ordered for the severe post-infusion headaches she’s having as they want to rule out a blockage in the blood vessels in her brain. Her headache pain is currently rated at a 6 on a 1-10 scale.

Her Immunoglobulin levels have dropped too low again; we’ll be at the hospital all week for another high dose IVIG infusion (# 11), running over 4 days this time, in hopes of decreasing the side effects.

She continues to struggle with the P.A.N.D.A.S. symptoms, most challenging the last couple years are the anxiety, emotional lability (strikes out of the blue) and obsessive bad thoughts, although there are many others. We hope this will dissipate as she heals (it takes up to two years with each exacerbation – this is # 3), as they have in the past.

She’s never had a full two years to heal as she has so many strep throat infections, that she winds up back at square one each fall/winter for the last three years every time she gets another one. Thus, she’s pulling out of this one more slowly than previously; however, we trust in God’s divine healing power.

Did I mention that we went Gluten Free in November… a week before Thanksgiving? Ha! It’s actually going quite well and we’ve had a lot of fun trying new things! I absolutely believe this alone has had a very positive impact, not only on the PANDAS, but on the migraines as well. Most PANDAS children struggle with rage, thrashing (severe tics… looks like a seizure, but if you’re familiar with those, the movements are different), unconscious episodes that can last up to several hours (and they do not remember afterward… a blessing as our kids are so guilt ridden). While Faith never had tantrums as a child; she has a severe case of PANDAS and experienced these episodes during her first two exacerbations… however, those have been completely absent this past year!! Praise the Lord for this blessing!!

Also, a young person dear to my heart has just been diagnosed with cancer and has started aggressive treatment for it.

I’ve been feeling the strain myself recently of too many medical challenges (and drama) in recent years, overwhelmed and tired. I’m sure I’ll be fine with God’s help, but I do need to make some changes to take better care of my own needs on a regular basis. I don’t tend to excel in that area.

People sometimes ask me how they can help in our journey with PANDAS. Please read this and take a few minutes to write your representatives on behalf of children who desperately need medical care for these autoimmune conditions. Thank you!

Do you have a child or know a family who has been impacted by PANS: PANDAS-PITAND?

I encourage everyone to contact their state representatives in support of similar legislation! This will only take a few minutes of your time and will do so much to help a child whose life has been turned upside down.

See this link: http://www.usa.gov/Contact/Elected.shtml to contact your representatives! It’s imperative to share with them the devastating impact this has on children and their families and the urgent need for additional research, as well as ICD listing and insurance coverage!

Please, be clear that high dosage IVIG *has* been shown to be helpful for these autoimmune conditions and should be covered by insurance for all PANDAS-PITAND (PANS) children. Each treatment costs $ 10,000 – $ 12,000 and many children (such as Faith) require ongoing infusions. Often, they are not covered by insurance.

Also, direct them to our website: PANDAS-PITAND Awareness & Research Supportfor additional information. Review the list of symptoms on our home page. Imagine your previously normal child suddenly becoming gripped by most, if not all of these symptoms at extreme levels of intensity. These children know there is something very wrong with their brains… they live with sudden onset

phobias,

obsessions,

contamination fears,

anxieties,

separation fears,

school refusal (yes, even children who loved school and were in gifted classes),

emotional lability, including rages (even in children who previously did not have temper tantrums)

ADHD

Major Depression

Relentless unwanted “bad thoughts” (this can range from thoughts of harming others to thoughts of suicide)

compulsions

memory loss

inability to trust your own brain and body that are suddenly turning on you in dramatic ways

The lives of your family change, literally overnight and are never the same… unless you can get this monstrous auto-immune disease into remission.

I co-admin a group of hundreds of PANS: PANDAS-PITAND parents, that grows daily. These families are in crisis, desperate to find help for their seriously ill child(ren). There are only a handful of physicians in this country who are currently experienced in treating these conditions. If you have any questions about these conditions, please message me through this blog or our website: PANDAS-PITAND Awareness & Research Support Contact page

Our children can’t wait. They need help NOW! Thank you for helping a child… please share this post.

ER… I suspect Faith has phlebitis or thrombophlebitis at IV site from IVIG infusion this week. I called our Peds after hours line & was told to bring her in to be evaluated. We just got home from Children’s Hospital around 1 am due to the side effects post-infusion. All three infusion days were about 14 hours … each. She remains in severe pain (rated at 9 on 1-10 scale) from the post-infusion headache.
#canmommysecureabedandsleep

Hubby has been working extended hours for work project; thankfully, the pressure on that seems to be easing now.

Prayers requested that this won’t be serious and for plenty of restorative sleep for all of us this weekend. We walk on faith that God holds us in His hands & take things moment by moment.

UPDATE: It is phlebitis, but thankfully, there is no blood clot. Rash on torso non-issue. Simple tx should resolve phlebitis at IV site within a few days. We’ll follow up with Ped to re-check in a few days. When Faith left the room for a few minutes, her nurse said she wanted to tell me that she noticed how elegant she is and how poised she carries herself… even with headache pain at a 9 on a 1-10 scale, she was still engaged with the ER staff and smiling… what a positive sign God gave me that healing is underway and her true personality is shining through.
#soblessed!

It’s been a long week … construction right outside our window here, cut her rate in half… helped a lot with headache, but took hours longer to run. I anticipate it will take even longer today.
Headache started spiking as she went to bed … hate to wake her. I’m feeling drained & weary from all the traveling … need rest. Hubby also working very long hours. We’re all exhausted. We’ll be home tonight & praying it’s a quiet weekend for all of us.
Faith is in a strong push to complete half a year of missed content (due to illnesses) and take state tests, starting next week; I’m overseeing that and helping her through it. Please pray she is well enough to do this.
Please pray for us… for stamina, good spirits, good rest and peace… and for all these issues to resolve smoothly.
UPDATE: Infusion is running, headache at 7-8 (I had her nurse give an anti-inflammatory, hoping that will help as nothing else is helping), we will only go up to half of max rate today, which we hope will help with the several days of post-infusion side effects (severe headaches & vomiting) she has been having. Here’s a pic of today – PANDAS girls can change the world!!! All PANDAS-PITAND boys & girls can… and I believe, will change the world!!! These children are amazing & have enormous intelligence, tenacity and courage!!

High dose IVIG Infusion # 10 starts today (Tuesday, May 15) & will hopefully, be done by Thursday evening. She’s in good spirits, after being able to participate in her worship dance recital last night.

We’ve been making dietary adjustments. We removed gluten in mid-November 2011 and her migraines (that were severe, not responding to medication & were the catalyst for two back to back hospitalizations at the time) improved three weeks later… to the day. She does still get them sometimes, but they respond to medication now. Also, since going gluten free, we’ve lost count of how many times we’ve walked out the door and found that it’s raining. This is of huge significance for both of us as our migraines have always been so strongly triggered by weather that I stopped checking weather years ago, since my migraines were a more reliable predictor that rain was on the way.

Because she had a dairy intolerance as an infant, I also removed dairy from her diet a few weeks ago as a trial to see if it helps – like gluten, removing dairy does help a lot of kids with neuro-immuno issues. I also started her on daily green smoothies… and… the Blendtec Total blender (with the new Wildside jar) my husband ordered for me just arrived!!! This is a pic of one similar to ours… and yes, we’re blending most, if not all (& more!) of the items you see in the pic in our green smoothies:

I was only able to use it one time before we headed to the hospital last night for her infusion today. The blend was amazingly smooth!! It was neat to see how much smoother than our regular blender was. What a delicious way to eat our greens & other nutrition! The last couple of weeks, I’m seeing her slowly start to improve… she still has a way to go, but we’re thankful for all improvements, no matter how small. 🙂

I’ll try to check in later… prayers are very appreciated that this infusion will go well as she has consistently been having severe headaches (sometimes with vomiting and fever) that last for nearly a week following these infusions.

Thank you for following her story and praying for her and our family… you’re each a blessing to our family!

My daughter’s English teacher informed me a few days ago that she would be administering the STAR Reading test on Monday (yesterday) and that she would like Faith to take the test. It does not count toward their grade (not relevant in this case as she has a strong A in most of her classes… we don’t have final for one of them yet); but, is a placement guideline to determine on what grade level the student is reading.

An avid reader, she’s always been 2-3 years ahead of her grade on these types of tests. Last fall; however, heading into the worst exacerbation of her life (we hope and pray she never experiences anything as severe again), her score dropped a little (I think it was grade level 8.0) from what it had been the prior year, when she was in 5th grade (I think she tested at grade level 8.3 in January of her fifth grade year). I knew the assessment in fall 2010 (6th grade) was not accurate, but they left her at that level until she could re-test.

As it turned out, she was too ill to attend school most of the school year and simply read for pleasure at home…. like me, reading has always been one of her favorite hobbies.

She took the test and told me when she got home that she was the first one done and the test was easy. I wasn’t sure what to make of that. She is NOT taking antibiotics and in the midst of a PANDAS exacerbation as we pass a few days waiting to do a strep throat culture at the doctor’s office at the end of this week (Friday). As I posted last night, she had a rough day at school, followed by a rather difficult episode that evening. It’s clear that the antibodies are swinging into full gear as they attack her brain. It’s difficult and painful to witness.

In any case, she told me this evening that she received the results of the STAR test she took yesterday. Her assessment places her on a 12.1 grade level. 🙂 Yes, you read that correctly. My ‘almost done with 6th grade’ daughter is reading on a 12.1 grade level… an increase of 4 grades since the autumn assessment and almost double her current actual grade level.

I am so proud of my precious daughter, who never ceases to amaze and inspire! Way to go, kiddo!!

We have received approval from our secondary insurance provider (approval from the first was received yesterday) for Faith’s IVIGinfusions.

As most of you are aware, she has been having an increasingly difficult time since soon after the 3 week point post her last infusion.

The specialty pharmacy will be overnighting the medication & supplies to our home. This formulation is a little different than the one she was receiving recently. This will be the same one as what she received locally previously and she seemed to do better on this medication so we are hopeful we will see that continue.

The first half of this infusion will be on Friday and the second half will be administered on Monday.

Her doctor is monitoring her progress and her labs and will determine where we go from here… if any adjustments are needed and how long she will require treatment.

Our next step is to eradicate these strep throat infections… we’re working on that…

Thank you all for your prayers… God remains in control and is providing for her needs. ♥

Even in the darkness of this journey… she just got a 104 on an English test and holds straight A’s ~ wow, just WOW… brings tears to my eyes! ♥ I’m so proud of you, Faith!!! I know how hard you have worked, even in the midst of illness, to complete your assignments.

Thank you, Lord… for restoring enough of her for this! 🙂 Praying she continues to heal/recover… ♥

As most of you are probably aware at this point, Faith improves a little more after every IVIG infusion; however, at just past three weeks from the last infusion, she starts to decline again. Clearly, while it helps her, she is not yet stable. Also, she continues to test positive for strep throat (as recently as Wednesday of this week), even on antibiotics and with the high dose IVIG infusions… she has not really cleared a strep infection in over a year.

I’ve been pursuing more research literature on Pubmed/Medline as well as meeting with doctors to seek help and determine what treatment plan they think would be best for her.

Our specialist (Immuno) wants to have Faith do IVIG every four weeks until she stabilizes. At that point, he will re-evaluate and determine what she needs next.

So, this is a HUGE praise that she will finally be on a better track and we are hopeful that in time the treatment will help her. Please keep in mind though, that this must be scheduled for the next infusion (she is already over 5 weeks since her last one at this point), so we are not looking at her being able to have this immediately. Additionally, while repeat IVIG does WORK and help children with PANDAS, we’re talking about a child who has been sick for quite a while…. years… probably about 6 years and this is her second severe exacerbation. We can’t anticipate healing to be immediate… it will take time – likely months… but we ARE hopeful that it WILL happen for her… at least much better than she is now… how much recovery, we do not yet know. We continue to pray and trust that she… and we… are in God’s hands.

Thank you for your continued prayers for my sweet, precious daughter… God is listening and He is with us. ♥